I've come to the conclusion I have Lupus, regardless what the NHS think

Hi all, sorry for writing on the forum again. Just wanna start off by saying I came down with Strep throat this week. High temputure tonsoles riddled with white dots.. I called the 111 service and they misdiagnosed it as a cold so I managed to get down the doctors who confirmed it was Strep throat and I was given penicillin. The days went on and I started to feel better, it was my nieces fourth birthday and she had a party at a ball park, but I noticed my one year old niece had a weepie eye and it was full of gunk, I thought nothing of it at the time.. I only released when I got home my left eye started to itch like crazy, then would you believe my eye started to weep gunk too.. I couldn't believe it! I was hopping to be free of illness to the run up to Christmas, but guess I'm asking for too much. The funny thing is my niece hasn't passed this infection on to ether of her parents or her sister or my partner who was close to her nor my mum who was close to her as well and I was hardly anywhere near her.

This is what I need to stress to the doctors at the NHS who apparently who have already apparently referred me onto the immunologist, and I still haven't got the conformation.

I'm so fed up with having a weak immune system, I'm the only one in my family who eats healthy, takes vitamin supplements and drinks water and I do walk a lot too.

Just seems very unfair.


9 Replies

  • Prior to my diagnosis snd treatment I never got ill at all funnily enough. Even when surrounded by ill people. The rheum explained that would have been when the lupus very active and thereforere my immune system very active and batting things away. It was after diagnosis when I got put on the immune suppresent medication that I started to catch everything. Strange I know x

  • I was the same! I'd pride myself on never catching what everyone else had. But if I did get sick I would be almighty sick but didn't happen very often. I lost my voice every year but never felt ill with it. Then I got the rash all over my face and now I'm a mess more often than not. Wish I was just normal n healthy.

  • I caught shingles when I started my medication!

    It was an awful time especially when I felt that something was going wrong with my scalp and the doctors had misdiagnosed it as a scalp rash! I went to 3 different doctors until one finally recognised the correct symptoms and prescribed me antivirals!!

    So I completely sympathise! But I would say that since stablising a bit more, I haven't had too many coughs or colds or other infections. Although like you i am prone to an eye infection from time to time! I would say definitely consider the flu jab as I've taken it the last two years and am relatively better!

  • Prior to diagnosis I was never unwell either.

    When on steroids I was unfortunate to develop shingles which was a result of the steroids suppressing my immune system.

    These days I'm on immunosuppressants and still don't get ill. I work in a GP surgery with patients coughing and spluttering all over me and I haven't had so much as a sniffle.

    I do, of course, get the annual flu vaccination, and I've had my pneumococcal vaccination.

    But I'd say active lupus made my immune system over active and any illnesses that were going never became symptomatic with me. My immune system dealt with them before I knew anything about it!

  • Im the same as others posted, lupus makes your immune system work overdrive like the people who have responded i very rarely got sick or caught illnesses off other like you say you have (eatpower).lupus is a very tough illness to live with and diagnosis is best done by your rhumy...good luck with your quest on finding a answer to feeling like you do. I hope you find out..have you had the normal tests ana etc..or seen a rhumy its better to go this route, as the rhumy with take your history and test results into account to determin a diagnosis, hope you have a lovely xmas and feel better soon.

  • Many people have low immunity to infection but to be diagnosed with Lupus is quite easy if you have a positive blood test for ANA then you have Lupus if there is no ANA detected you do not its that simple

  • I have just returned from a cruise and picked up a virus with a hacking cough which lasted 4 wks until 2 lots of amoxiycillan finally got rid of it. However i have lost the hearing in my left ear, have recurring bouts of conjunctivitis and very painful knees as if they are full of burning liquid. I have been on prednisone for 7 days for the ear prob and there is no improvement. My eustation tubes in my ears are full of fluid too. I guess my immunity is down and rather than gobbling more steroids or penicillan i wonder if anyone can recommend a natural remedy to get me over these recurring problems please. I also am sleeping about 12 hrs and have no energy. Mary. Nz. Thank you

  • I'll second you if you second me? There we both have Lupus

    take care

  • It's fine. I found out why I caught conjunctivitis. No help to the rude/troll replies. Good day, chumps!

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